Disclosure of Parental HIV Positive Status: What, Why, When, and How Parents Tell Their Children in the Era of HAART in South Africa


The aim of the study was to explore the decision to and the process of disclosure of parental HIV status to children. Focus group interviews were conducted with 21 parents of 39 children aged 7 - 18 years. Participants were recruited from a highly active antiretroviral treatment (HAART) program of an academic hospital in South Africa. Parents disclosed more to older children than to younger children in the same family, and the breadth and depth of the information shared was depended on the age of the child. Communication with adolescent children included topics on HIV prevention and unsafe sexual practices. For parents with a long history of sickness, disclosure occurred soon after the diagnosis was made, when they had not commenced with antiretroviral treatment (ART). They disclosed to prepare their children for HIV related emergencies and imminent death. Parents also expected support from their older children after disclosure. Some parents were forced to disclose because children suspected their HIV status, and parents could not continue to hide symptoms like severe weight loss. In addition, parents disclosed to educate children on how to protect themselves from HIV infection. For most parents, disclosure was unplanned, emotive, and burdened with anxiety and fear of rejection by their children. However, when the decision to disclose was made, parents were honest and open and informed their children that they were HIV positive. Parents may benefit from disclosure support services, and health care providers can assist parents in deciding when and how to disclose.

Share and Cite:

S. Madiba and C. Matlala, "Disclosure of Parental HIV Positive Status: What, Why, When, and How Parents Tell Their Children in the Era of HAART in South Africa," World Journal of AIDS, Vol. 2 No. 3, 2012, pp. 194-202. doi: 10.4236/wja.2012.23025.

Conflicts of Interest

The authors declare no conflicts of interest.


[1] UNAIDS, “Report on the Global AIDS Epidemic,” UNAIDS, Geneva, 2009. http://www.unaids.org/en/dataanalysis/epidemiology/2009aidsepidemicupdate/
[2] O. Shisana, T. Rehle, L. C. Simbayi, K. Zuma, S. Jooste, et al., “South African National HIV Prevalence, Incidence, Behaviour and Communication Survey 2008: A Turning Tide among Teenagers?” HSRC Press, Cape Town, 2009. http://www.hsrc.ac.za/Document-3239.phtml
[3] K. Bhaskaran, O. Hamouda, M. Sannes, F. Boufassa, A. M. Johnson, et al., “Changes in the Risk of Death after HIV Seroconversion Compared with Mortality in the General Population,” Journal of the American Medical Association, Vol. 300, No. 1, 2008, pp. 51-59. doi:10.1001/jama.300.1.51
[4] S. Biadgilign, A. Deribe, A. Amberbir and K. Deribe, “Barriers and Facilitators to Antiretroviral Medication Adherence among HIV-Infected Paediatric Patients in Ethiopia: A Qualitative Study,” AIDS Care, Vol. 6, No. 4, 2009, pp. 148-154.
[5] M. Ferris, K. Burau, A. M. Schweitzer, S. Mihale, N. Murray, et al., “The Influence of Disclosure of HIV Diagnosis on Time to Disease Progression in a Cohort of Romanian Children and Teens,” AIDS Care, Vol. 19, No. 9, 2007 pp. 1088-1094. doi:10.1080/09540120701367124
[6] S. Kallem, L. Renner, M. Ghebremichael and E. Paintsil, “Prevalence and Pattern of Disclosure of HIV Status in HIV-Infected Children in Ghana,” AIDS and Behavior, Vol. 15, No. 6, 2010, pp. 1-7.
[7] L. R. McKinnon, M. Kimani, C. Wachihi, N. J. Nagelkerke, F. K. Muriuki, et al., “Effect of Baseline HIV Disease Parameters on CD4+ T Cell Recovery after Antiretroviral Therapy Initiation in Kenyan Women,” PLoS One, Vol. 5, No. 7, 2010, Article ID: e11434. doi:10.1371/journal.pone.0011434
[8] C. A. Mellins, E. Brackis-Cott, C. Dolezal, A. Richards, S. W. Nicholas, et al., “Patterns of HIV Status Disclosure to Perinatally HIV-Infected Children and Subsequent Mental Health Outcomes,” Clinical Child Psychology and Psychiatry, Vol. 7, No. 1, 2002, pp. 101-114. doi:10.1177/1359104502007001008
[9] S. Qiao, X. Li and B. Stanton, “Disclosure of Parental HIV Infection to Children: A Systematic Review of Global Literature,” AIDS and Behavior, 2011, pp. 1-21.
[10] S. T. Hawk, “Disclosures of Maternal HIV Infection to Seronegative Children: A Literature Review,” Journal of Social and Personal Relationships, Vol. 24, No. 5, 2007, pp. 657-673. doi:10.1177/0265407507081453
[11] D. A. Murphy, “HIV-Positive Mothers’ Disclosure of Their Serostatus to Their Young Children: A Review,” Clinical Child Psychology and Psychiatry, Vol. 13, No. 1, 2008, pp. 105-122. doi:10.1177/1359104507087464
[12] J. Rwemisisi, B. Wolff, A. Coutinho, H. Grosskurth and J. Whitworth, “‘What If They Ask How I Got It?’ Dilemmas of Disclosing Parental HIV Status and Testing Children for HIV in Uganda,” Health Policy and Planning, Vol. 23, No. 1, 2008, pp. 36-42. doi:10.1093/heapol/czm040
[13] E. W. Schrimshaw and K. Siegel, “HIV-Infected Mothers’ Disclosure to Their Uninfected Children: Rates, Reasons, and Reactions,” Journal of Social and Personal Relationships, Vol. 19, No. 1, 2002, pp. 19-43. doi:10.1177/0265407502191002
[14] T. Tompkins, “Disclosure of Maternal HIV Status to Children: To Tell or Not To Tell … That Is the Question,” Journal of Child and Family Studies, Vol. 16, No. 6, 2007, pp. 773-788. doi:10.1007/s10826-006-9124-z
[15] L. Nam, K. Fielding, A. Avalos, T. Gaolathe, D. Dickinson, et al., “Discussing Matters of Sexual Health with Children: What Issues Relating to Disclosure of Parental HIV Status Reveal,” AIDS Care, Vol. 21, No. 3, 2009, pp. 389-395. doi:10.1080/09540120802270276
[16] A. Shaffer, D. J. Jones, B. A. Kotchick and R. Forehand, “Telling the Children: Disclosure of Maternal HIV Infection and Its Effects on Child Psychosocial Adjustment,” Journal of Child and Family Studies, Vol. 10, No. 3, 2001, pp. 301-313. doi:10.1023/A:1012502527457
[17] D. Pilowsky, N. Sohler and E. Susser, “Reasons Given for Disclosure of Maternal HIV Status to Children,” Journal of Urban Health, Vol. 77, No. 4, 2000, pp. 723-734. doi:10.1007/BF02344033
[18] D. Kennedy, B. Cowgill, L. Bogart, R. Corona, G. Ryan, et al., “Parents’ Disclosure of Their HIV Infection to Their Children in the Context of the Family,” AIDS and Behavior, Vol. 14, No. 5, 2010, pp. 1095-1105. doi:10.1007/s10461-010-9715-y
[19] L. Armistead, L. Tannenbaum, R. Forehand, E. Morse and P. Morse, “Disclosing HIV Status: Are Mothers Telling Their Children?” Journal of Pediatric Psychology, Vol. 26, No. 1, 2001, pp. 11-20. doi:10.1093/jpepsy/26.1.11
[20] R. O. Delaney, J. M. Serovich and J. Y. Lim, “Reasons for and against Maternal HIV Disclosure to Children and Perceived Child Reaction,” AIDS Care, Vol. 20, No. 7, 2008, pp. 876-880. doi:10.1080/09540120701767158
[21] A. H. Vallerand, E. Hough, L. Pittiglio and D. Marvicsin, “The Process of Disclosing HIV Serostatus between HIV-Positive Mothers and their HIV-Negative Children,” AIDS Patient Care and STDs, Vol. 19, No. 2, 2005, pp. 100-109. doi:10.1089/apc.2005.19.100
[22] M. B. Lee and M. J. Rotheram-Borus, “Parents’ Disclosure of HIV to Their Children,” AIDS, Vol. 16, No. 16, 2002, pp. 2201-2207. doi:10.1097/00002030-200211080-00013
[23] T. Xu, Z. Yan, K. Rou, C. Wang, R. Ye, et al., “Disclosure of Parental HIV/AIDS to Children in Rural China,” Vulnerable Children and Youth Studies, Vol. 2, No. 2, 2007, pp. 100-105. doi:10.1080/17450120701335791
[24] D. A. Murphy, M. E. Dello Stritto and W. N. Steers, “Maternal Disclosure of Mothers’ HIV Serostatus to Their Young Children,” Journal of Family Psychology, Vol. 15, No. 3, 2001, pp. 441-450. doi:10.1037/0893-3200.15.3.441.
[25] E. Brackis-Cott, C. Mellins and M. Block, “Current Life Concerns of Early Adolescents and Their Mothers: Influence of Maternal HIV,” The Journal of Early Adolescence, Vol. 23, No. 1, 2003, pp. 51-77. doi:10.1177/0272431602239130
[26] R. A. Ostrom, J. M. Serovich, J. Y. Lim and T. L. Mason. “The Role of Stigma in Reasons for HIV Disclosure and Non-Disclosure to Children,” AIDS Care, Vol. 18, No. 1, 2006, pp. 60-65. doi:10.1080/09540120500161769
[27] M. J. Rotheram-Borus, D. Flannery, E. Rice and P Lester. “Families Living With HIV,” AIDS Care, Vol. 17, No. 8, 2005, pp. 978-987. doi:10.1080/09540120500101690

Copyright © 2024 by authors and Scientific Research Publishing Inc.

Creative Commons License

This work and the related PDF file are licensed under a Creative Commons Attribution 4.0 International License.